New bill may allow employers to see your genetic info, unless you pay a fine

A controversial new bill to debated by US Congress may pave the way for companies to ‘fine’ employees for failing to provide genetic information.

The bill, labelled the Preserving Employee Wellness Programs Act, has been described by its supporters as a continuation and clarification of the wellness program policies outlined in the Obama Administration’s Affordable Care Act.

Yet according to its critics, it could allow bosses pressure their employees to undergo genetic tests, and demand to see the results. Employers could even ask to see test results and medical histories for family members, with workers facing up to a 30% increase in their insurance if they refuse.

“[The Bill] means that an employee has virtually no control over their own genetic information”, State College lawyer Jennifer Wagner told The Atlantic.

The bill was approved last Wednesday by the House Committee on Education and the Workforce, with a spokesperson saying that it “reaffirms wellness program policies reflected in the Affordable Care Act and provides uniformity to the regulations governing those programs”.

Those involved in genetics research have also expressed concern that individuals may no longer participating in genetic testing, due to fears that their employers will request the data.

“People might not want to benefit from clinical advances out of fear of genetic discrimination,” Derek Scholes, director of science policy at the American Society of Human Genetics, told The Atlantic.

Last week BioEdge reported on newly passed Canadian legislation, which prohibits ‘genetic discrimination’ by employers.

One of the star exhibits in the Royal College of Surgeons' Hunterian Museum of anatomy in London is the skeleton of Charles Byrne, an 18th Century Irishman who was about 8 feet tall. However, the museum is to close in May for renovations and there are calls to use the opportunity to remove or bury the remains. Does this make sense?

A celebrity in his day, Byrne died in 1783 of ill health and drink in London. He knew that John Hunter wanted to dissect him after his death, so he directed his friends to sink his body in a lead-lined casket in the English Channel. Alas, Hunter succeeded in stealing the body anyway and it eventually turned up in a display case.

Similar events darken the history of the Australian state of Tasmania. The last full-blood Aboriginal Tasmanian, William Lanne, died in 1869. Although the story is murky, it appears that before his funeral the Surgeon-General of the colony, William Crowther, stole his head for “scientific study” and someone else removed his hands and feet. There is no record of scientific studies. Crowther went on to become premier, and an impressive bronze statue of him was erected in the centre of the city.

The last full-blood Aboriginal woman in Tasmania, Truganini, was terrified that the same thing would happen to her and directed that her body be cremated. Her wishes were ignored and her skeleton ended up in a display in the Hobart Museum. It was finally cremated in 1976.

Nowadays body-snatching would not be tolerated (although the Hunterian Museum still refuses to remove Byrne’s body from display). But the notion that scientific curiosity is its own justification persists. University of Tasmania historian Stefan Petrow points out, that the fate of Lanne and Truganini demonstrate “the hegemony scientific knowledge sought to establish over fundamental human rights such as a decent burial”. Can’t the same thing be said about some aspects of stem cell research?